Thank you again for the reply, Dr. Diana. I’m amazed at your dedication and attentiveness to people who need help.
I’ll have my second EMG this afternoon, so will find out if I have ALS.
I guess I knew the CCSVI train kinda came and left. People were getting awfully excited, but then only about half of everyone was having benefits, and many of those were experiencing restenosis afterwards. But there seem to be a few out there, with MS or similar conditions, who reap long term benefits. I was thinking it might be helpful just to get evaluated to see if I had CCSVI, regardless of whether I got the balloon angioplasty, because there must be other variables to manipulate that affect venous drainage, (some of which I think you’ve discovered through research and trial and error).
After a full week on Diamox, I notice my vision, concentration, and headache are all better. Also, I think as a byproduct of being able to focus and SEE what’s going on, I also lose the usually ever-present low-level anxiety while on Diamox. It’s interesting that we notice results at low dosages, because the neuroopthamologist I just saw said he recently published a study that showed that only really high doses of Diamox have an effect on intracranial pressure; the only reason I could get a Rx from him for 250mg 2x/day was because he said at that dose it can’t possibly do anything, either good or bad. I disagree, but didn’t say so…because I wanted that script! But my guess is that in the research he published, they were measuring ICP using lumbar puncture, and I think if ICP is affected by posture and head/neck position, that lumbar puncture might not be terribly reliable.
I thought I had read something of yours that stated that being on Diamox and histamine blockers might make CCSVI treatment more likely to yield positive results…but maybe that was old info.
For the next month, I have to stay off the Diamox, which bums me out…but it’s for a good purpose. The chiari specialist I’m working with wants me off of it for a month, and then to do a therapeutic lumbar puncture, where the purpose is to remove enough fluid to get ICP down to a certain level, and see what effect it has on me symptomatically. But in order for that to work well, we need to eliminate any effect of the Diamox. He wants to determine whether the tonsillar descent is causing the elevated ICP, or vise versa. Because loads of unfortunate folks get decompression and only come to realize, the tonsillar herniation wasn’t the main issue.